PNH REAL STORIES

Meet Lisa

Diagnosed with PNH at 34 years old

In 2003, Lisa was living in Canada when she began to develop large bruises on her legs that would not go away. Concerned, she visited her doctor, who performed several rounds of blood work, none of which gave them an answer.

Several days after her final round of blood work, she received a call from her doctor saying she needed to have an emergency bone marrow biopsy. Her first thought was that she had leukemia—she was scared.

But she didn’t have leukemia. She was diagnosed with severe aplastic anemia and a small clone of paroxysmal nocturnal hemoglobinuria (PNH). She began treatment for severe aplastic anemia and, with her health improved, eventually began dragon boat racing. However, in 2007, her PNH started to progress, and she grew increasingly symptomatic. With her disease worsening, Lisa had to stop racing and begin working with her doctor to manage the symptoms of her PNH. After a few years, Lisa eventually felt well enough to return to dragon boat racing. Today, she continues to manage her disease and is training for her next big race.